“Who can become lost in a narrative,

     if all he can think of is the end?” 

– Mark Doty, “Lament-Heaven”

And so, with cancer comes the question: What is the new narrative of my life?

And others:

How long do I have left?

What is my treatment plan?

Logistics: Do I continue to save? Plan a world trip? Get rid of my old stuff?

Planning, the economic and spiritual foundation of modern American self-efficacy, is the Harley-Cancer-Davidson motorcycle driver that breaks you off, sidecar sidekick, and leaves you in the little rig by the side of the road while he takes off down the two-lane highway of certainty. Putt putt, sputter. Stop.

And here you are, ditched and detached in the Death Valley of all deserts, left to contemplate your options. It’s quiet all right. And there’s no driver for miles. What to do, what to do?

I struggle with this. If we continue the metaphor, with Death Valley and the unmoored, detached passenger, bewildered and shocked at the side of the road, I’m still sitting. Two years later and I’m still sitting, still scratching my head, looking at the map and trying to figure out how to get back home. Do you know what I mean?

It’s kind of tragic. It’s also, at times, patently absurd. And funny. I mean: no hair! And what’s a lopsided gal to do when running? Plenty of room to contemplate.

arizona asphalt beautiful blue sky
Photo by Nextvoyage on Pexels.com

Many other survivors and friends have come past, offered advice, suggested lovely and some-odd things, and pointed out alternate routes. But I can’t go back. I can’t go back to the home of the Old Body, the Old Life. The new is here. And I’m still working out how to navigate life, work, the process of living with chronic disease. I want to rush it. I want to “make it work,” learn from it, deal, manage, fix – do all the productivity-oriented activities my previous and old life would have deemed necessary in order to overcome any personal obstacle. And in focusing on the corrections and fixes, I wonder if I’m losing some kind of view.

That is, just being, living, fully taking in the transition. The road. The sidecar mishap-tragedy that, like Emily Dickinson, tells it slant. Because even in this, there is a narrative. There is story, there is process, there is some nugget of love and living that wants to find a way.

Here now, it seems to tell me. Look at your body, the earth, even the rocks at the edges. Sit awhile longer and take it all in.

No more need to rush. For now, no need for fear.

 

You Are a Charged, Lit Bulb: Waiting for the SCAN

It’s coming.

bright bulb close up conceptual
Photo by Pixabay on Pexels.com

It’s the CT, PET, or MRI. The acronyms don’t matter as much as the fear, because what if? What if there’s a blip, a lighting up, a growth, a recurrence, an expansion, a concern? And what if there isn’t? What then?

(“Clear,” calls the Emergency Medical Technician before shocking the heart.)

Cancer is an abusive lover. I’ve learned not to celebrate too much when things go well, because the trust in a long-term, healthy future is gone. Even if the scans show nothing, trust in the world has failed. The sure sense in an ongoing future has failed. Planning a year or five years ahead with certainty? Failed. This “lover” – cancer – is always lurking, its revenge always a possibility. It hides its power, it lures you into comfort. It charms you back into living. It leads you back into your body, the ease of each day’s choreographies: movements through the front door, work, friends, gestures here and there, family, food.

Oh hello, hair, hello travel plans — let us begin again. Let us pretend with the ease of the healthy-bodied living that we are ever ongoing, that we will not, in our careful financial records and remodeling plans, ever perish. Tahiti? Paris? A mani-pedi scheduled for Friday. Oh, and the workout.

Scans jolt me out of this trance. There is the word we are all trying so hard to avoid: death. Dying. A finite closure, that the body and mind and this life as we know it will end. Will.

And so, I have a scan today. A CT scan to see if this current treatment of Xeloda and Taxotere are working to shrink this recurrence. If the tumor has shrunk, we continue, proceed with later surgery, and keep cancer at bay for awhile longer. I’ll take it.

If it’s not working, then we don’t know. Clinical trials, hope for the best.

Filaments, fibers, fears.

What is Triple Negative Breast Cancer? Hint: Not a Lottery Win.

It’s also not as terrible as the Internet searches would have you believe. Here’s the lowdown:

  1. It’s a breast cancer that has no hormone receptors, and therefore currently no targeted treatment.
  2. It’s a rarer type – 15-20% of breast cancers are triple negative.
  3. It’s more common in African-American and Latina women. Diagnosis and treatment equity are a real need.
  4. It has a “worse prognosis,” but if you are a newly diagnosed TNBC (triple negative breast cancer) sister reading this, know that it is a hotbed of research, and new treatments are coming out all the time. Old statistics are not your friend. There is hope.
  5. It is aggressive and tends to spread/grow more quickly than the other types.
  6. It has a higher rate of recurrence, mostly within the first three years.
  7. It tends to be higher grade (more quickly and aggressively proliferative) and is also discovered at later stages.
  8. Due to its high recurrence rate, most treatments tend to include chemotherapy. Good news: Chemotherapy tends to work very well for TNBC.
  9. Like all other cancers, it stinks.

What Triple Negative Breast Cancer is Not:

  1. A death sentence.
  2. A slow moving, hormone-receptor positive breast cancer for which targeted treatments like Tamoxifen are available. (Although: some TNBC tumors have slight estrogen-receptor positivity, and so at times TNBC patients are prescribed Tamoxifen.)

In talking about this type of breast cancer in my support group and in the world at large, I often find myself having to place TNBC on a hierarchy of ease-of-treatability types. This is understandable. The world of treatment changes constantly, and clinical trials and subtypes and genomic testing are – happily – complicating and more specifically targeting treatments to every woman’s benefit. Yet: TNBC almost always comes out the worst, is still, in some circles, considered the diagnosis to deliver with a sigh and a pause, and Google/goggle/ogle/oogle aka do not Google will only offer doom. Don’t do it.

So, if you have it, I welcome you with open arms to this most unexpected club. We’re a rarer sort, part of the “danger” side of breast cancer. I think of us as the Austin Powers version:

danger-is-my-middle-name

 

Except we have better teeth.

Yeah, baby.